“We are so grateful for the financial assistance to help cover the costs of respite nursing. Faith’s 24/7 total care needs takes a toll on our entire family when we don’t have support. When we have night nursing, we can get much needed sleep and manage daily life with more energy and protect our physical and mental health.” – Bridget, Faith’s Mom & JJMF Community Parent
This touching statement from JJMF Community Parent, Bridget, highlights such an important message. Like Faith, many children with complex neurological conditions require around the clock care, which understandably can quickly become very overwhelming for their families. As Bridget pointed out, respite care can help relieve this demand so that parents can protect their own self-care and allow them more energy to focus on the things they love doing with their children. Faith, a social butterfly who loves interaction with others, enjoys engaging in activities like swimming and ice skating with her parents and family members.
Faith was born with SOX2 anophthalmia syndrome and is affected with severe neurological issues including episodes of status dystonicus, which involves severe, widespread muscle contractions. Her diagnosis has affected her globally including endocrine deficiencies and gastrointestinal motility issues. The JJMF was eager to support Faith and her wonderful family with a financial assistance grant to help with the cost of respite nursing, which we know is essential to Faith and her family’s health and well-being.